Kisan
Lal and his wife live their lives with great grace
in their mud-plastered house by the Ganga, in
the impoverished locality of Jwalapur, in Haridwar.
Living in extreme poverty throughout their lives
has not embittered them; it has probably only
imbued their personalities with simplicity and
gratitude for what they do get.

The GPH nurse on a home
care visit

Mr Sebastion giving
supplements to Kisan Lal

Kisan
Lal suffers from oesophagus cancer which is in
its terminal stages. He earned a living as a labourer
till he fell ill. His palliative treatment, medicines
and nutritional supplements are being sponsored
by Ganga Prem Hospice, whose nurse visits him
twice a week. The elderly couple enjoys the visits.
A 'khaat' is put out in the courtyard, which has
neem trees, drying cow dung cakes and the traditional
kitchen, where the stove is made of bricks and
plastered with cowdung, which works as an antiseptic.

The financially poor in this area adopt environment-friendly
ways out of necessity. The charpoys which they
set outside to lie down on are made from recycled
material: knitted polythene bags and packaging
materials.

Kisan Lal's recycled
charpoy - nothing goes to waste

"I
am alright now and want to work," says
Kisan Lal. His wife adds how he can't sleep
at night, thinking about getting back to work.
The aspiration is simple: Kisan Lal wants
to run a tea-vending cart nearby. Some kerosene
oil, some tea leaves and a stove is all he
wants. For a man who is perhaps unlettered,
Kisan Lal astonishes everybody by talking
about the former prime ministers of India
and remembering their long names correctly.

Kisan Lal's palliative treatment at a Dehradun
cancer hospital will start again after a few weeks.
He has little sign of discomfort now apart from
a mild pain in his throat. The fact that he is
weak, however, is evident from looking at his
thin arms as the Ganga Prem Hospice nurse measures
his blood pressure.

The couple have no children. Kisan Lal's wife
smiles very easily and has an open heart. "I
find it hard to wash clothes due to the arthritis
problem, but a doctor treated me. May his children
live long," she says.

Sometimes the couple have little to eat.
Kisan Lal's desire to have milk and rice
pudding at Divali was going unfulfilled
till the Hospice driver gave him two hundred
rupees so that the couple could have a treat
for the festival.

The Hospice team leaves Kisan Lal's home,
and the couple comes to see them off with
folded hands in a display of thankfulness
and humility, which is in fact a sign of
their generous character.

Kisan Lal bids
the home care team farewell

Kisan Lal died on February 20th,
2011

Kisan Lal, the sixty-year
old oesophagus cancer patient, died on February
20th, 2011. The patient and his wife, a childless
couple living in Haridwar, could hardly make ends
meet or afford any kind of medical treatment.
In his last days, Kisan Lal was all skin and bones.
Barely able to get up from his bed, unable to
speak, eat or drink, his face was all swollen
due to the progressive state of the cancer.

His wife took him to
his native village near Roorkee for three
weeks where the patients condition worsened
in the absence of palliative care. On the couples
return to Haridwar, the Ganga Prem Hospice nurse
reported with distress the very grave condition
of the patient who had also developed a bedsore.
The patient was given palliative medicine to make
his remaining time less uncomfortable. A day later
Kisan Lal passed away, leaving his wife who is
herself ageing. In the absence of any means of
earning a livelihood, companionship and support,
she is likely to face a very difficult time ahead.

There is no social security for such marginalised
people who have to suffer the double blow of losing
their loved ones to an exacting disease like cancer,
and being left without any financial support whatsoever.

Gulfam AliLiving in the end stages
of cancer

A
flight of stairs lead up to the very Spartan living
quarters of a large family in the Jwalapur area
of Haridwar. In a room that has but three cots,
the only sign of adornment are verses written
in Urdu and photographs of shrines. A small table
cluttered with medicines shows that a patient
lives herethe forty year-old lung cancer
patient Gulfam Ali. His disease being in the the
last stages, the cancer has ravaged Gulfams
body, appearing on the right side of his face
and neck as an open tumour.

Seeing
that the nurse who has been making home visits
has come, Gulfam sits up and holds the right side
of his head, indicating that he is in terrible
pain. The tumour has all but clamped his jaws
shut. Its too painful to speak.

Gulfam's tumour,
seen here as a puss-ridden wound, prevents
him from speaking

As
Gulfam Ali takes away the dressing from his
face, it becomes evident why the mood in the
house is so sombre. A big puss-ridden wound
on the neck and the cheek stares at everybody.
Gulfams young and pretty wife explains
in colloquial Hindi that the wound has a discharge.
With illness and death hanging in the air,
the financially impoverished family is still
much composed and accepting of the sorrow.
A quality that the poor and less fortunate
people in India almost always have.

Gulfam prefers to do
the dressing on his own. He holds a mirror and
works away at his wound. Hes afraid
to let me do the dressing because it would hurt,
but the puss really needs to come out, even if
it means bearing some pain, explains the
Ganga Prem Hospice nurse to Gulfams wife.

Gulfam
is one of the several sons in the family.
He lost his job when he fell ill with lung
cancer. The already poor family has few sources
of income and cancer treatment has further
added to their woes. The family members and
well-wishers soon come to check on the patient,
innocently asking the nurse to give some medicine
which would make the mouth open. They also
speak to the Hospice driver, who is more like
a friend to the male members of the family.

GPH nurse Sicily
Sebastion on a home visit, explaining
to Gulfam's wife how his wound must
be cleaned

Even with such an end-stage
disease, Gulfam is still holding out rather well.
Perhaps because his forty year old body is still
young and has some reserves of energy. If he is
angry inside, he does not show it. His hair has
greyed though. Gulfam Alis wife cares for
him lovingly. The nurse gives her the sterilized
dressing and explains to her how the unused dressings
have to be kept untouched.

It is not a happy situation,
but the Ganga Prem Hospice team of the nurse,
driver and co-ordinator are more than welcome,
being treated to tea, biscuits, some salty savouries
and even sweets.

Dr Goel examining
Gulfam Ali at the GPH cancer clinic

The
Hospice team departs with a heavy heart. Its
a sad feeling when there is so much suffering.
The task of handling dying patients all the
time seems onerous. The conditions are not
so comfortable either: a long journey, uncomfortably
warm weather and the difficult job of emotionally
supporting not only the paitent but also the
family.

The silver lining however
is that the patients and their families are happy
or at least welcoming. Gulfam Alis father
comes down the stairs to see the team off. The
care, medicines and a helping hand mean so much.

Gulfam Ali died on October 25th,
2010

Gulfam Ali passed away on
the night of October 25th in Haridwar. His lung
and oral cancer condition was at its last stage.
In the end, Gulfam Ali suffered from excessive
cough and phlegm, and on the night he died he
was moved to a nearby clinic where he was put
on oxygen to alleviate his laboured breathing.
He later collapsed at the clinic, after which
he left his body.

During his last few hours, Gulfam Ali was speaking
lovingly to his family members, although his parents
were away from home on a pilgrimage to pray for
his recovery.

Gulfam is survived by his wife, three daughters
and a son.

NeemaBattling with liver cancer
- as a widow and an impoverished mother of three

Thirty
four year old Neema is a young widow living
in Rishikesh. Her lack of family support and
her impoverished financial situation are not
the only things that have gone wrong for her.
Neema suffers from progressive liver cancer
and there was a time not so long ago when
her condition was considered terminal.

Neema at the Ganga
Prem Hospice clinic

However, Neema has continued
to live a near normal life. Some consider it a
miracle. The oncologists however attribute the
longevity to a rare neuro-endocrine
liver cancer which progresses very slowly.

Neema lives near Laxman Jhula, and can see the
river Ganga flow by from her rooftop. Her home
is a room in a school building run by an activist
who has taken good care of her, giving her odd
jobs to do in the school like taking care of children,
sweeping the floors and cooking to earn a living
and to keep herself occupied. The little school
children and two big friendly dogs are her constant
companions.

Says Sarojini Murthy, the Ganga Prem Hospice
palliative care counselor, Neema is on her
feet. On one occasion, I saw her at Swargashram
taking the school children out for a picnic. She
gave me a radiant smile and chatted.

Neema has seen worse times. As a young widow,
her family from Devprayag deserted her, leaving
her to look after her two daughters and a son.
The little family soon disintegrated with Neema
earning living as a tea vendor in the touristy
Laxman Jhula area and later going to the Shivananda
home as a patient inmate. Her son was taken by
a relative to bring up, and the two daughters
left on their own. Now Neema's health has improved
and she is back with her two daughters but a shadow
comes over her face when she thinks of her older
teenaged daughter who has become a rebel and dislikes
being in the school where she is being sponsored
for her education. Neema's main and constant worry
is the future of her children.

Neema is being supported by the Ganga Prem Hospice
home care programme. The Hospice nurse visits
her every few days to check on her medical condition,
to listen to her worries and console her as much
as possible.

PATIENT'S STORIES
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